Brave Doncaster teenager has defied doctors predictions to reach 17

He’s the brave boy who has confounded the doctors.

By David Kessen
Sunday, 6th June 2021, 6:43 am

He’s the brave boy who has confounded the doctors.

When Lewis Jeynes was diagnosed with the rare degenerative illness Batten Disease aged just two, doctors warned his mum and dad he may not live beyond 12.

But earlier this year, Lewis, from Bessacarr, proved those medics wrong as he celebrated his 17th birthday.

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Lewis Jeynes with mum Samantha Tolmie

HIs family hopes he will still be with them for a long time to come.

But it has been a tough year for Lewis. He has suffered health problems which left him facing upsetting treatments in hospital. And now his family have made the heart wrenching decision that he will not go into hospital if he gets seriously ill again, or be resuscitated.

Lewis developed normally until he was aged two, walking and talking. Then one day he began limping. He lost the use of his legs, then his arms, then he couldn’t swallow.

He is on a ventilator and is prone to epilepsy and respiratory disease. He can no longer walk, move, or speak. But Samantha says he can communicate with those who love and care for him using his eyes.

Lewis Jeynes and mum Samantha Tolmie during a visit to the Yorkshire Wildlife Park

Last time the Free Press caught up with Lewis, we helped a arrange a Christmas treat for the youngster, in 2017, when we teamed up with Haughton Park Farm near Retford to arrange a special visit to him from some reindeer. Earlier that year, he had been best man at his dad, James Jeynes’ wedding. James and Lewis’ mum Samantha Tolmie split in 2008, but remain good friends.

But the coronavirus pandemic has hit Lewis’s family hard.

Mum Samantha said: “Our last trip out with Lewis pre-covid was to The Deep on his 16th Birthday - February 28, 2020 - where we jokingly discussed a new virus which might take over the world.

"A few weeks later that joke became a reality for us all and so Lewis went into extreme isolation, being classed as clinically extremely vulnerable. Our daily trips to the local Hatchell Wood had to stop and the chest physiotherapy gained by walking through the bumpy woods had to be recreated at home in the garden with bits of wood to walk Lewis’ wheelchair over – like a wheelchair obstacle course!

Two-tear-old Lewis Jeynes has been struck with a mystery illness which has left him unable to walk or talk. He is pictured with mum Samantha, and Dad James (Picture: Liz Robinson D9166LR)

"Life changed a lot inside the home too – the care staff had to begin wearing PPE, face masks, visors, goggles, gowns, aprons and we went through hundreds of pairs of disposable gloves. The new normal became faces without smiles and so we had to get very good at reading eyes.

"Thankfully we had a great friend, Gareth, to brave the supermarket for us once a week and to do pharmacy runs and other odd jobs outside of the front gate. We had to have signs up to prevent people from coming near the front door and it became very lonely as we could not even spend time with close family and friends.

“We got very good at Zoom and spent many evenings laughing and joking over family quizzes, as well as taking up some self-help zoom classes too, as well as fun activity Zoom calls with Post Pals charity – one of them was a drawing class with the charity patron Fern Cotton.

“Thank goodness for the beautiful weather – we spent so many days outside in the beautiful sunshine, watching Joe Wicks on YouTube, dressing up, singing and dancing, celebrating VE Day by dressing up in 1940s clothes and watching local Doncaster talent perform on Facebook Live, enjoying hours of laughter doing puppet shows in the sunshine and learning how to blow enormous bubbles."

However, the pressure of the pandemic took a toll on the team of carers and nurses helping to look after Lewis. The family are still now, a year later, desperately struggling to get new people to join what they affectionately call their ‘TeamLewis’ care team of professional carers. The family says it is not easy to care for Lewis, as he has very complex clinical needs, and it requires a very special kind of person to be able to take that on.

Late last year, after lockdown had eased, the family did manage to go out again.

Samantha said: “We did manage to visit the Yorkshire Wildlife Park a couple of times, but were so very sad to hear that Victor, our favourite polar bear passed away, and then earlier this year we were heartbroken to hear that Behansen, our favourite giraffe, had also died.

"We have not been able to visit the park since it re-opened with its new entrance but we hope to when the weather improves.”

Lewis has also been hit with more health problems since last year.

“Late 2020 and early this year, we had to spend quite a lot of time in hospital, both at the local Doncaster Royal Infirmary children’s ward and also at Sheffield Children’s Hospital Critical Care Unit,” said Samantha. “The outcome of several weeks in hospital on and off between December and February meant that how we look after Lewis in the future has changed a lot.

"We have now made the difficult decision to no longer treat Lewis invasively. This means he will no longer be admitted to hospital for any reason, he will not be treated with intra-venous medications, and he will not be given resuscitation.

"Our most recent experience of hospital was so traumatic for us all, Lewis was very unwell and had so many needles, and procedures, so much pain and discomfort and fear.

“He has done so well to reach the ripe age of 17, way beyond the predicted life expectancy of 10 to 11 years old. We feel that now it is time for Lewis to decide how much longer he wants to be with us. I hope it will be for a long time to come, but we will not interfere when he decides he is ready to leave us.”

In these confusing and worrying times, local journalism is more vital than ever. Thanks to everyone who helps us ask the questions that matter by taking out a subscription or buying a paper. We stand together. Liam Hoden, editor.